Journal of palliative medicine
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The purpose of this study was to assess patient participation in advance care planning (ACP) and the decision to enroll in hospice. ⋯ These data indicate that some patients are not actively involved in the decision to enroll in hospice and that others, often physicians and family members, are making these decisions for the patient collaboratively. These data support the need for early education and interventions that assist patients and families in discussing ACP preferences and the need for greater understanding of how involved patients want to be with the decision to enroll in hospice.
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To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. ⋯ This study demonstrates that direct observation methods can be feasibly used when studying physician-patient/physician-family communication in palliative/end-of-life care, but few investigations have utilized this approach. This article highlights areas that need improvement, including physicians' ability to address patient/family emotional issues and provide what patients and families find most satisfying (participation and support). A particular focus on older patients and patients with end-stage or late-stage chronic (noncancer) illness, the adaptation/application of existing communication measurement tools to capture palliative care communication issues, and development of corresponding outcome measures to assess impact is now needed.
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Living wills have a poor record of directing care at the end of life, as a copious literature attests. Some speculation centers on the questionable correspondence between the scenario described in living wills versus the real-life circumstances that typically arise at the end of life. ⋯ The modest correspondence between living will responses and wishes for life-sustaining treatment in specific scenarios helps to elucidate the living will's poor performance. Presentation of more realistic end-of-life scenarios should improve the living will's ability to guide care, as well as preparing patients and families better for the end of life.
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Increasing numbers of Americans die in nursing homes. Little is known about the roles and experiences of family members of persons who die in nursing homes. ⋯ End-of-life advocacy takes on increased urgency when those close to the dying resident have concerns about basic care and do not understand the dying course. Enhancing communication, preparing families at the end of life, and better understanding of hospice are likely to increase family trust in nursing home care, improve the care of dying residents, and help reduce family burden.